Almost 4 years ago I lost my dear friend Jessica as a result of her lifelong battle with Muscular Dystrophy. Muscular Dystrophy is a genetic condition that results in weakening and deterioration of muscles in the body.

Jessica spent her whole life in a wheelchair, watching others experience things she knew she never could. Fortunately, she was born into the most amazing family ever! They never ever let “disability” impact her experiences in life (or her brother’s, who also has MD). They took several family vacations, included her in community events, had wild and crazy parties at their house, and even had the courage to send her off to Central Michigan University where she nearly completed her Master’s degree.

When you hear the word “special” it can mean many things, in the case of my son, Jacob, it means living in a world that is truly his own and helping him cope with the world around him. Jacob has a genetic abnormality. He is missing a piece of his 4th chromosome, which has led to cognitive and developmental delays. Along with the chromosomal abnormality, Jacob exhibited autistic tendencies and was later diagnosed with Autism.

We had the best intentions…

Our family had the best intentions. We strived to create a great future for my younger sister, Sarah, who has Down syndrome, no matter what future events would transpire. For weeks, we endured many hours of emotional conversations. We thoroughly hashed out all of the precise details of our plan. We thought through every pitfall, evaluated every potential problem, and developed strategies to overcome such obstacles so that Sarah could live a purposeful, impactful life.

In today’s culture, images and stories of success are at our
fingertips 24/7 through social media. It’s easy to get caught up in comparing
ourselves to others.

On the one hand, social media can be a source of inspiration
and motivation, showing us pictures of other people succeeding in areas in
which we aspire to be successful, too. On the other hand, we could look at
those same photos, and feel like we don’t measure up…and we never will.

“We need to figure out how we are going to support our child when we, as parents, are gone.”

“How can we make sure our government benefits cover all of our expenses?”

“We have to make sure you have a sound strategy to fund your Special Needs Trust.”

These statements–uttered by both parents and professionals–are made daily because my industry has made special needs planning into a process that is focused on keeping families stuck with limited expectations and a limited mindset about the future.